There are so many people with chronic and mysterious symptoms that the western world has developed show-and-tell entertainment around being sick. There are television shows, corporate websites, online series, and major news segments dedicated to showcasing all of our complications. Why do we engage with industries that make a profit off of our pain? Simple. We are desperate.
With hundreds of thousands, even millions of people looking for cures to their long-term ailments, the appeal of sharing your problem with the world and getting a solution quickly is overwhelming. Maybe there is a doctor out there who is interested in my case? What if someone else has my symptoms and already knows the cure? If we can’t find solutions in real life, maybe the virtual and entertainment worlds can help with our symptoms? Unfortunately, medical desperation is rarely met with useable advice.
You can look at any website dedicated to the chronically ill community and find thousands of people at the ends of their ropes. There are heart-wrenching messages of hopelessness and pleas for answers around their conditions. The same is true for television shows that cast for mystery illnesses and medical abnormalities. Of course, the weirder the better. Anything that draws clicks and eyeballs outplays the more subtle invisible disorders.
It is important to look at why there are so many chronically unwell people in the world. While some of our diseases may be labeled as rare, the amount of suffering and the similarities of many patients leaves me convinced that we are not all alone in our struggles. With all of us making noise, maybe the medical profession will listen and engage with chronic illness differently.
There are so many of us desperate for help that the mentally and emotionally vulnerable are swindled out of their money, time, and hope. Organizations and companies with ill-intent feed on our desperation… and we make it easy. After yelling at walls and crying at doctors for so long, most of us will jump on any opportunity to have symptom management. When you’ve already tried all of the abundant “alternative” treatments, there isn’t much stopping us from jumping head first into the pool of bizarre unproven cures.
I’ve spent my time and money on fringe treatments because I had nothing to loose. There were no more doctors to see or procedures to try that didn’t cost tens of thousands of dollars. I went down weird Internet rabbit holes searching for anyone who could relate to my pain. I found people who suffer from the same issues that I do and many more who deal with variations of those symptoms. Of course everyone’s ideas for solutions were different. No one had found the reason or the cure for our illnesses.
Besides the dangers of trying out medical treatments lauded by anonymous users, giving up personal information out of desperation for help is a bad idea. While your doctors may need a detailed medical and family history, posting your age, location, and medical drama online can give any malicious lurker enough information to do harm.
I have a research background so I try hard to keep my information private, but when I am considering taking my life at 3am because of my broken body, it is not easy to be a cautious sufferer. Any of us could fall victim to false claims and the allure of a national spotlight on our diseases. Just remember the old saying about something being too good to be true. While we hold onto hope, we also have to hold onto sanity and scientific curiosity. Yes, it sucks to be miserable, hold yourself together, and fight for answers. But we have to put our energy into finding real cures and not letting anyone take advantage of our desperation. However deep it may be.